Watch: Philippa Langley and Steve Coogan discuss portrayal of ME in The Lost King
Philippa Langley, whose search for the remains of Richard III forms the centre of new movie The Lost King, says she was keen to be honest with the writers about her life with ME.
Myalgic encephalomyelitis, also known as chronic fatigue syndrome (CFS), is a long term neurological disease that causes debilitating fatigue, extended recovery from physical activity, pain, and problems with memory, concentration and the control of pulse and blood pressure.
The condition is commonly stigmatised and seldom depicted on screen, with those who live with ME/CFS often experiencing prejudice from those who think they're just being lazy.
She said: "Only my very close friends and family know about it. I did hum and haw about whether I mention it to Steve and Jeff. But I thought I've just got to.
"I've got to just give them everything and they will make their own decisions about what they feel is important and what isn't important.
Read more: How Hollywood has depicted Richard III
"And when I mentioned it, Steve said 'look, this might be important'. This is a physical condition that gets ridiculed and laughed at. Not so much now but, way back then, it was the eye-rolling condition. You're just a shirker."
The movie follows amateur historian Langley as she becomes obsessed with Richard III after seeing a performance of William Shakespeare's play about the monarch, which depicts him as a hunchbacked villain.
Langley then joins the Richard III Society and fronts the search for his remains, which ultimately leads to their dramatic discovery beneath a Leicester car park in 2012.
Coogan, who has fought to restore Langley's reputation as the leader of the search, said the prejudice around ME/CFS echoes the misconceptions around King Richard.
He said: "There's a parallel with being judged unfairly in that regard, with Richard III — he having been judged unfairly and caricatured. So we thought it was important to bring that to the fore."
Read more: The historical facts Hollywood gets wrong
Russell Fleming, communications manager for charity The ME Association, told Yahoo that life has improved in recent years for those living with ME/CFS, but the stigma still remains.
He said: "As Philippa has said, ME/CFS was an illness that did not receive complete acceptance from the medical profession and some people with the illness had to face a great deal of stigma from the media and wider society.
"This made living with this very debilitating neurological condition even more difficult — especially when family members were not understanding."
Fleming pointed out that the NHS recently published new guidelines for ME/CFS after lobbying by the ME Association, and said the effects of Long COVID — often very similar to ME/CFS — have highlighted the struggles of those with the condition.
"Long COVID has presented a real challenge to the NHS but we are working to ensure these patients receive the best possible care and support," he said.
Fleming added: "Unfortunately, suitable healthcare provision for people with ME/CFS and those with Long COVID is still not available in Wales, Northern Ireland, or Scotland. But we hope the positive developments we have seen in England will reverse that situation in the very near future."
The Lost King will be released into UK cinemas on 7 October.
Watch: Trailer for The Lost King